Better living, higher standards: improving the lives of disabled people by 2020

2014 is a big year for Scope. Our new strategy is all about changing society and we have ambitious plans to make society a better place for disabled people. 20 years ago, we changed our name in a bid to take a stand against bad attitudes to disability. By ditching the name Spastics Society, we helped knock that insult out of circulation and got people questioning attitudes to disability.

But 20 years on, life is still tougher than it needs to be for disabled people who want the same things as everyone else. We’ve come a long way since our name change but there is still further to go. There are still major issues when it comes to attitudes and these go hand in hand with policies and practises that undermine living standards.

Living standards are about a whole range of things that matter to people. It’s about opportunities to work, get out and about, and see friends and family.Alongside financial assets, income and jobs, we all depend on having skills we can use to learn or work. We rely on public services and on positive attitudes from family, friends and the wider community in which we live. All of these and more make up living standards for all of us.

Our report reveals that:

42% of disabled people told us that they had lost out on a job because of the way employers perceived their impairment “every time” or “a lot of the time”.

Half of disabled people say that services they receive do not enable them to take part in community life.

Disabled people are twice as likely to live in poverty as non-disabled people, and half (49%) of disabled people use credit cards or loans to pay for everyday items including clothing and food. Disabled people are three times more likely to draw on doorstep loans.

Disabled adults spend an average of £550 per month on costs related to their disability.

The recent recession has had an impact on living standards for many people. But for disabled people, the struggle to make ends meet has always been a fact of life. As the economy recovers we are calling for all political parties to use this opportunity to make sure once and for all that disabled people can contribute to economic growth and have the same chances as everyone else.

If we want to improve disabled people’s living standards we need to fix the problem of extra costs, poor employment opportunities and poor social care. We also need to shift the attitudes that create many of these problems.We have to see these areas as linked – we can’t fix one without the other; and we need government action that ultimately improves disabled people’s living standards.

Let’s create a society in which the extra costs some disabled people face – such as paying for specialist equipment or for taxis due to inaccessible transport systems, are no longer a barrier to making an economic contribution or to social participation.

We are calling for the value of extra costs payments such as Disability Living Allowance or Personal Independence Payments to be protected. And in June 2014, Scope will be launching a Commission investigating the drivers of disability related costs and making recommendations on how to tackle them.

Let’s create a society in which all types of work are available to everyone; a society in which disabled people have opportunities to be drivers of, and benefit from, new employment opportunities arising from economic growth.

We are calling for increased options to prevent people slipping out of the labour force unnecessarily and for new opportunities created through strategies for economic growth, such as City Deals, to work with, and include disabled people.

Let’s make sure all disabled people get the support they need to live as independently as possible

Let’s create a society in which more disabled people have the opportunity to live independently in the communities they choose and in which more working age disabled people can afford the care and support they need to live an independent life.

We are calling for a new financial settlement in the next Comprehensive Spending Review that ensures that everyone who is eligible for social care will get the support they need to live independently in the community. We also want to see greater focus on improving quality of care and support mechanisms, including through the integration of strategies on employment, health and social care to keep people in work, living in their own homes and preventing crisis.

The recovery gives us an opportunity to think differently: employers, public services, government, all of us. It’s an opportunity to make society work better for disabled people.

Let’s make sure disabled people aren’t left behind as the economy recovers.

20 thoughts on “Better living, higher standards: improving the lives of disabled people by 2020”

You want to get 1 million more disabled people into work, so that would be nearly half of the unemployed, you want to get into work, what a depressing reflection of society that is that easily the largest group of unemployed are disabled.

You are not improving the life of my brother or the other residents of the residential homes you are proposing to close across the country. You are effectively making them homeless. You have nothing in place to replace these homes and you are abrogating you responsibility to these vulnerable people. You are abandoning a group of severely disabled people who need 24 care in the full knowledge that there is nowhere comparable for them to go to.

Scope may not like the idea of residential homes but my brother and his fellow residents, his friends, are safe and happy there surrounded by carers they know and who understand their needs. He has been at his home, Hampton House in Northampton, for 24 years. Some residents have been there well over 30. To take this away from them without considering how traumatic that is going to be and without first finding out if there is anywhere appropriate for them to go (there isn’t) is unforgivable.

What Scope are doing is cruel and they should be ashamed of themselves.

SCOPE has lost its’ way and has unrealistic ideals that society is far more advanced than it truly is and it’s vision is so far removed from the reality, as to be nonsense. A new name and vision document will not compensate for closing eight of your residential care homes (rather than modernise and re-develop and keep long established friendships and skilled staff with vulnerable people who choose to live in group situations). A new website and a new policy does not negate that you are forcing 190 of society’s most vulnerable to move out of their homes into a society where you openly admit, funding and services are woefully inadequate. To add insult to injury, you are advertising for Project Managers to oversee home closures as ‘exciting opportunities’, how inconsiderate and totally emotionally void are the senior management and/or HR team at SCOPE? You should be ashamed of yourselves and the devastation you are upholding as ‘transformation’.

Scope are saying that 2014 is a big year for them and that their new strategy is all about changing society and they have ambitious plans to make society a better place for disabled people. What that means to them is closing 8 of the care homes they currently run forcing nearly 200 severely disabled residents to find alternative facilities. Never mind what cost or trauma they endure Scope will have achieved its objective and in doing so will make the lives of these vulnerable people a complete misery and will destroy the network of friends and support that has been built up over the past 30 plus years.
It is true that 20 years ago, they changed their name in a bid to take a stand against bad attitudes to disability. What they really meant was that they were abandoning the very severely disabled and would concentrate on providing better facilities for the less disabled which would provide them with a much needed better public persona and thus bring in more donations.
But 20 years on, life is still tougher than it needs to be for disabled people who want the same things as everyone else. Scope has now embarked upon a strategy that will make life even tougher for those people who trusted them to provide a safe and secure environment. They are actively withdrawing support for the most vulnerable in our society. By deciding that running care homes does not fit comfortably with their new core values they are throwing about 190 severely disabled people aged between 25 and 60 onto the street expecting someone else to pick up the pieces. They think they have come a long way since their name change but there is still further to go. If their current strategy is anything to go by a lot more vulnerable and disabled people better look out as they will also find themselves abandoned.

For all I feel it is brilliant that you are supporting such aspirations for disabled people I think it is a shame that such an ‘experienced’ a charity as Scope has such a stereotypical and biased view of disabled people. That you have ‘lumped’ all disabled people into having the same aspirations and the same levels of abilities/disabilities astonishes me. You seem have have had a very ‘knee jerk reaction’ assuming that as a particular way of life works for some people it must work for everyone. This is a very rookie, yet I will admit, a very politically common mistake. Throughout this summary and in the main package it refers to such things as disabled people ‘saying’, it has pictures of disabled people talking, shaking hands with others, pushing themselves along etc. What about people who are too severely disabled to even do these things Scope? What about people like my sister who will never be able to work, who don’t have the mental capacity to make a choice or even understand what one is? For such people these aspirations are simply not relevant. But rather than accept this and design other ways of addressing the needs of these people you seem to be trying to ignore these differences and just ‘lump’ them in with everyone else. You seem to just be hoping that it will all work out in the end and that such people will appreciate what you are doing to them – namely throwing them out of their homes. Please remember Scope that disabilities are unique and it is not one way of life/ aspiration fits all. In throwing these people out of their homes you are no better than the government or councils reducing funding for vulnerable people. Continue to work to meet the needs of more able bodied / mentally capable disabled people, but don’t force this way of life on others for whom it is not appropriate or appreciated.

2014 is a big year for Scope – it certainly is – and one that many families of disabled people will remember too , as you plan to close 8 residential care homes that are under your care deemed to be old fashioned with no plans to meet their specific needs of the individuals currently living in them. It all sounds idealistic, beautiful, serene, yes supported living bring it on- please let me know who is going to fund it though- The local authorities really!!!you honestly believe that [and pulling the wool over our eyes] that the Local Authorities will fund all of this – when budgets are being cut and placements under funded. Haven’t we already experienced the so called care in the community. I am ashamed of you and your lip service. Of course we would all like to see better standards and higher standards for disabled people. However, closing homes of vulnerable people who have been in a close knit community for 30-40 years knowing that there are no placements available to meet their needs in the community is disgraceful. SCOPE I challenge you to find me a placement for my sister who is in one of these homes NOW she is severely disabled with cerebral palsy you are closing and can’t wait until 2020. I look forward to your reply.

The Spastics Society changed it’s name to distance itself from the appalling attitudes and treatment of the disabled in their ‘care’ homes, yet the same staff continued to be employed. For example, a woman my age, lived at one of your ‘care’ homes in Sussex in the early 1970s: she was left in bed all day, unable to get up without assistance and with no activities or interaction with staff or other inmates, or therapy of any kind, she counted the stitches in the blanket on her bed to stop herself going insane. The staff at the care home told her family not to visit her as there was no point or benefit. Everday I think of that woman who, while I was having fun as a teenager, suffered appalling neglect and cruelty. Changing the name of an organisation doesn’t change anything, Windscale is still radioactive. I don’t trust your organisation, you do not have the best interests of all you represent. There are many with multiple and complex problems who will never benefit from work. To fail to ensure that the needs and human rights of all disabled, including those who cannot benefit from work, are not retained and respected is an inexcusable failure of the most vulnerable. What I wonder does all this government pleasing talk benefit The Spastics Society/Scope? Money, power and influence? Well you don’t impress me or my son, who has been diagnosed with double hemiplegia cerebral palsy and who has an involuntary movement disorder with vocalisations and paralysis of one side of his throat. No, indeed, we are not impressed by the cuts to services and the loss of benefit, the constant threat of losing our home. Nor are we impressed by those who support a government which strips the most vulnerable and their carers of a barely adequate system of welfare using an inaccurate, degrading, harmful and cruel process of assessment of eligibility for benefits.

We understand that our proposals to close or change 11 of our care homes over the next three years is difficult for some people who may be affected. We will fully consult with each resident, their family and staff before making any decisions. We strongly believe that the society we live in will be a better place if disabled people are fully included, that is what our report recommends and is the basis for these proposals. You can find out more about why we’ve made the proposals: http://www.scope.org.uk/support/proposals-about-our-care-homes

We know one size doesn’t fit all and that is why we want to close or change these large old-fashioned care homes. We’re also working in partnership with local authorities, many of whom, despite funding cuts, have the same aspirations for disabled people as us.

We will not make anyone homeless – we know disabled people will have a range of aspirations and needs for their lives and we are committed to supporting each person to work with their family, local authority and support staff to make sure they get support that meets their needs. We know this is difficult for some people, whilst other residents and their families are more optimistic about the better opportunities that they will have if the proposal goes ahead. We are continuing to meet with residents, you, their families and staff in person and would welcome the opportunity to talk through our proposals with you, please contact feedback@scope.org.uk

Yet more meaningless rhetoric from Scope in the pathetic non-answer above. Did you even read the comments? If you did you ignored every point made as usual. We don’t want to talk through your proposals – we have heard them over and over and they are meaningless to the people you are abandoning. We want you to hear what we are saying, what the residents red saying and what the staff are saying. My brother may not be made homeless – he will most likely end up in an old people’s home which is where Notts County Council wanted to put him 24 years ago due a lack of alternative (my parents found Hampton House). He is 49 now and nothing has changed except that Scope are removing this option. He would be better off dead. That would be one less severely disabled person for Scope to bother their little heads with and leave them to deal with less severely disabled people they can cope with.

Above it says there are 11 posts but I only count 9 including Scope’s! Are you censoring them and keeping some back from the public domain. It’s a blog – print them all. It’s just the same old same old and I am guessing our friend Mr James Watson O’Neil wrote the one above as I recognise the wording! Scope you have no intention of supporting all the members of our families. You have caused insurmountable pain. You can all go home at night satisfied you have done a day’s work and have no worries. I have to pick up the pieces and console my terrified sister who rings me constantly asking where she is going to be next year! You do not care where they will be as you will be handing over to the local authorities – job done!. We know you are going to sell the land to the highest bidder – it’s all about money and greed! SHAME ON ALL OF YOU IN THE OFFICE OF SCOPE – SHAME ON ALL OF YOU WHO WORK THERE!

I am now firmly of the opinion that irrespective of what individuals write to Scope concerning these home’s closures, that Scope has an off pat one templates response. You never waver from saying the same old unconvincing plethora of PC retorts and at no point have ever actually openly admitted that you may be wrong. How can you choose to ignore so many people at so many levels and trundle blindly onwards in your mission to negate your responsibilities to society’s most vulnerable and remain deaf to the voices of the people who truly know the reality of these people’s needs and even more importantly, the reality of communities that cannot and will not provide anything anywhere as near as good as what people are getting in the residential homes and let’s be honest, it’s not like we’re fighting for fantastic environments but we are fighting for environments that hold and nurture our loved ones and don’t discard them for fear of standing up to the PC brigade and saying, ‘one size does not fit all and we Scope are still the people who can and will meet people’s needs, even if this is residential care’. Wake up and take a realistic pill, as I fear tragedy awaits if you do not!

We have not made any decisions, or even started consulting about the proposals yet. It’s really early days and we haven’t made any changes. We are sorry we keep saying the same thing, that is because we haven’t formally consulted with you or made any decisions, so they are just proposals at this stage. We will continue to talk with you as we start consultation at different times in different care homes over the next three years.

From our previous experience, disabled adults who’ve lived in other care homes which we’ve closed, have not found it as upsetting as staff expected. We know the proposals do cause anxiety and we are continuing to meet with residents and staff to talk about what they mean for them. In previous times, most people they have gone on to enjoy living with different or familiar kinds of support. We are committed to working with each adult to make their own choices about the support they want in future, after any decisions are made. Supporting residents is our first priority and we are committed to getting the right support in place at the right time over the next three years.

We welcome your involvement and support for your relative, and we will continue to read, post and respond to your comments here on the blog. You can also contact feedback@scope.org.uk if you would like to talk about this more individually.

But But But – you never do respond to what we are saying! You say you want to hear what we say but you then totally ignore it and continue as if we haven’t said anything! READ OUR RESPONSES AND REPLY TO EACH COMMENT ONE BY ONE. Scope are not improving the lives of our severley disabled relatives. They are making them immeasurably worse. That’s too much trouble though isn’t it? Severely disabled people have become too much trouble for you to bother about. Stick them all in a lonely flat on their own where they can do nothing except stare at a wall or stick them in an old people’s home where they can do nothing except stare at a wall. They can’t do anything. They can’t complain. Much better for Scope to concentrate on less disabled people who are so much easier to deal with. Lucky them. I don’t welcome your usual predictable, pathetic response but I know that’s all I’m going to get.

My son has been living at Hampton House for 23 years. He is very happy and fully involved. He has friends and they all look out for one another. When will Scope realise that the residents in their care homes need each other – not their own kitchen etc. They need company and the stimulation of seeing lots of people – not their own front door, which when shut, will leave them in solitude until somebody answers their call. My son can do nothing for himself, he needs to be moved from place to place, he needs his TV/music system switched on, channel changed etc. My worst nightmare is for him to be on his own behind a closed door with nobody answering his call.
How is he going to manage his finances, medication etc.
He is a very sociable young man but cannot move himself about to see people.
Scope needs to wake up to the fact that homes like Hampton House are necessary now and will be needed in the future. Babies are still being born with severe disabilities, they are going to grow into adults and will need to be cared for.
Put some money into these homes to improve facilities, or build new ones to support these very vulnerable adults.
Or do you really want to turn your backs on the people who need the most care?
I am very disappointed in the proposals that Scope say are “exciting opportunities” – for whom? Not for the residents who have this hanging over them – they are powerless, that is why we have to speak out for them. We understand what they are going through Scope does not! You have no empathy – SHAME ON YOU!!

SCOPE seems to forget that there is a distinction between sickness and disability and many shades of each. There seems to be an assumption that those who are too sick to work will automatically benefit from work and societal change when trying to work will in many cases simply make their condition worse. Currently, many people are forced to leave work due to ill health only to be erroneously found ‘fit for work’ by the work capacity assessment. Assessment of who really can be capable of some work needs much more realistic assessment. The needs of an aspirational young person with moderate disabilities may be very different from an elderly chronically sick person approaching the ever rising retirement age..